My mom’s case
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Julie…..I have learned that Gemcitabine and Cisplatin is the first line of treatment. Once failed or patient reached optimum benefit the choices become less clear. You are mentioning a targeted agent, has your Mom’s tumor tissue been tested for molecular alterations? The data derived from such testing will set the path to available targeted agents.
Our Melinda had Immune cell therapy (Adoptive T cell therapy) with spectacular results and if offered, is worth checking into. However up to date (as far as I know) only 3 cholangiocarcinoma patients experienced tumor regression to various degrees. But this is an ongoing study and many more may have had the opportunity to enter a clinical trial of this kind.
Dendritic cell therapy has not been discussed on this discussion board, hence I have no knowledge of efficacy with this treatment.
Drugs that work with your immune system to interfere with the growth and spread of cancer cells in the body include: Opdivo (nivolumab) and KEYTRUDA (pembrolizumab) and often are combined with targeted agents.You may also want to get in touch with two physicians very familiar with this cancer.
Dr. Suebpong Tanasanvimon: https://www.bumrungrad.com/doctors/Suebpong-Tanasanvimon
and Dr. Virote Sriuranpong: https://www.bumrungrad.com/doctors/Virote-Sriuranpong
Hugs,
MarionJuliet,
The best thing I read on your post was that you were only one month in but had already completed surgery and you are on to the next thing, so there was no screwing around. Frankly, that’s how I describe this cancer to people, I tell them “it’s a no F@$# around cancer.”
I don’t think you really have time to think. You almost have to have a plan for this cancer before you ever get it. Which really sucks, especially when you’re someone like my mother, who had never been sick a day in her life – you need time to process it all, but you don’t have it.
So your mother hit it hard, quickly, which from my point of view probably gives her the best chance.
Joe
Welcome, Julie, to our special family. I am so sorry that your mom is dealing with Cholangiocarcinoma. I know this is a very scary time for your family and I can hear a note of panick in your words. I have been in your shoes with my husband and I want you to know that there is hope. My husband was staged at Bismouth 3 A, which is even more advanced. We found doctors that are very experienced with CC and we took each day step by step and issue by issue. There were times we didn’t think he would make it, but he did. He is now a year and a half post resection and feeling wonderful. Please try not to look too far out, rather focus on the next step. There are many excellent medical teams in your region. I’m not familiar with them but I’m hoping someone on this board can point you to experts in your region. Perhaps your mom’s surgeon is one of them. Do you know if the surgeon achieved clear margins? My husband’s surgeon found a few stray cells after surgery, so the team decided to use SBRT on the woun margin to kill off any stray cells remaining.
Your mom is lucky to have you guiding her.
Debbie
Hello, Julie and welcome to our remarkable family. I am so sorry to read about your Mom. I just want to say congratulations on your hard work as a Medical Student and wish you much success. Honestly there is no way for you to have diagnosed the CC. Many medical people still find it a hard Cancer to diagnose. Part of the problem is there is nothing much to discover until CC has already been rearing it’s ugly head. I know that GEM/CIS is normally the first Chemo but hope others chime in on the ADIpeg20.
You are so right about friends being here and will find a lot of support right here. Please do keep us updated about your Mom as we do truly care.My mom was diagnosed as cholangiocarcinoma on month ago, with presentation of skin itch, jaundice, body weight loss. I am desperate. I’m a medical student and I know that cholangiocarcinoma has a very poor prognosis. And I couldn’t detect my mom’s situation earlier!!The doctor told us the remnant lifetime was approximately 6 months. A big shock!!
I don’t know who to ask or where to seek for the most professional medical opinion.
While waiting for the declining of bilirubin level, I found a doctor who has managed many kind of these cases. And he gave us hope that the tumor is at least resectable.
Now, my mom had just done her operation(central hepatectomy+bile duct resection) for 1 week. However, another desperate news strikes. The staging is T2a and 1/5 node positive. Lymph node metastases is a significant prognostic factor. Now, we are searching for the adjuvant therapy. If anyone could give us some advice, we would be very greatful!!
Now, gemcitabine plus cisplatin is the most common regimen. We’ve seen a clinical trial with cisplatin + target therapy with ADI PEG 20, I’m wondering if anyone have done this? We also seek for another chance with immunocell therapy(still confused whether dendritic cell series or T cell specific series would be more suitable for cholangio).
I saw a lot of brave friends fighting for their lives here. Very thankful to have this communication board, and know there’s many people working for this cancer. We’re not alone. We gave each other courage to fight and hope to live.
By the way, we are from Taiwan.
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